Thanksgiving has been a difficult holiday for me for the past few years. Frankly, I find it hard to be thankful when my beautiful baby girl, now three years old, is suffering under two catastrophic diagnoses and is so profoundly physically and functionally disabled. The pain of her conditions does not ease with time, it intensifies, as she gets harder to keep entertained (she is very smart...we are working on learning the multiplication tables using her flash cards) and, at 34 pounds, she is becoming physically difficult for me to move and carry. I am worn thin, and looking to bring live in help into my home, a move I have resisted for a long time. I also find it hard to be thankful for myself. Holidays, especially ones where we are expected to celebrate our good fortune, grate on my already raw soul, particularly since they are typically spent in the company of other families, with their multiple healthy children, who really are thankful for the truly abundant good fortune it is to have one, let alone several, healthy children. And while I do not doubt that their thankfulness is true and deep, I do doubt that anyone who has not experienced something close to the unrelenting pain, loss, and struggle we have for three straight years, much of which has not been shared here, can even come close to understanding what it is like for me to experience these types of celebrations, and how their good fortune so greatly magnifies the pain of my misfortune. I wish I did not experience these things this way, but I do, and I refuse to let that be one more thing to grieve and one more thing to make me feel bad about myself. Trust me, it is enough knowing that I gave Naomi two of the genes that cause her difficulties. That is not to say that there are not things for which I am thankful. I am thankful for Naomi every minute and second of her life, which is so much the more precious to me because I know, and have known since she was 3 months old, that it would be short. I am thankful for Rob, who is loving and hard working and loyal. I am thankful our lack of want of material things. I am thankful that Naomi is still here with us, and that she is smart, and funny, and silly, and that I have found a way to communicate with her and teach her. I am thankful for the many wonderful people Naomi has brought into our life, her Early Intervention therapists (I am planning a post to honor them and their work) her new IU8 teachers, and many devoted doctors and nurses (nurses are especially kind and compassionate) and the family, friends and strangers who have reached out to help us in our struggles. I am particularly thankful for the way Naomi has touched so many people's lives; I do truly believe she is an angel. And, I am thankful for my friend, Julie, who has an angel of her own bringing people together and changing people's hearts, and who has been a well of compassion and understanding in our common experience, as well as an inspiration for me.
Here are some recent pictures of Naomi modeling the clothes I sew and knit for her.
